The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Saturday, October 26, 2013

Spa Day, Day 9

I was so happy when I learned that Tyler would be able to join us today.  I knew we had a big day to tackle, and thankfully our other children were busy having a great time at the Latimer carnival with Mike and Mindi Burrows.  The kids had a wonderful day.  I never received a call from Natalie telling me that she misses me...I know she was happy; I saw a picture of her riding a horse, and that is perfect for her.  She loves animals.  Speaking of Natalie...her recent EEG came back normal--meaning we did not see new issues or active seizures.  We were so relieved and will focus on sorting out her seizure medication to minimize the side effects we believe they are creating.

For today, Alice woke with her hair line nearly three inches receded from where it was when she fell asleep. As each hair fell out it became tangled in the rest of the intact hair creating a mess.  Having dad here to help gave her the extra needed courage to allow us to cut it out.  She felt much better after, and enjoyed a warm bath.

Alice had an x-ray today.  It came back showing some small spots of possible bacteria in her lung.  This could be the source of the fevers.  However, since they switched the antibiotic the fevers have improved.  Our goal is to have her walk and be mobile as much as she is able to help the lungs clear the fluid and stay healthy.  This task is harder than it sounds.  Still nothing has grown from cultures.

Alice received more platelets today.  The doctors are adding Lasix to help rid of the extra fluid that builds up after many infusions.

One more day behind us and looking forward to the days of healing.


Ready for Spa Day!
Tyler said Alice's hairdo looks like an ancient Chinese person. 

At first Alice seemed a bit sad when her hair was out, we weren't sure how to interpret her feelings.  Tyler put her hair on his head to cheer her up, initially she wasn't sure what to think of it, then moments later she wanted us to show everyone the picture of her dad wearing her hair.  She seems to be okay with it all.  I asked her if her head feels better with the hair gone, and she nodded.

Once we cut the hair out with the scissors this is what was left, at this point, it's easier to shave it rather than wait for it to finish falling can be so itchy otherwise.  Tyler did a fantastic job shaving the remaining hair. 

Grandmother showing Alice her Halloween costume.  Grandpa has been away on business, it was nice to see him.  Alice put her head under the covers when they left, because she wanted them to stay longer--to me that was a precious way for her to communicate her feelings.  Grandmother had just picked Grandpa up from the airport, he couldn't go home without seeing Alice, we were happy they made the detour. 

Busy Day in Alice's room.  It was a very good thing dad came to help with today's agenda.


  1. Oh poor baby! She looks so swollen and miserable :( I know you don't know me. I found your blog through SDL and read it from start to now in less then 12 hours (it was a slow night at work)

    1. Bet you cried alot, because i sure did!

    2. A few months ago when I found this blog I read the entire thing too!

    3. I cried a ton, not an easy task to do when you have to answer phone calls for a living.


  3. Alice you are adorable hair or no hair!